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Transplant Journey

Amazing Grace

Day 144. I haven’t visited my blog in many weeks. ‘ All things must pass’ and yes I have made it to the other side. Did you know that this phrase comes from the bible? “see that ye be not troubled: for all these things must come to pass” This series of blog posts have come to an end as well. This is my thank you and goodbye for now, posting.

I am doing very well. I am no longer on the cyclosporin. The drug that is an immune suppressant. My regular visits to the hospital is now once every three weeks. My system has been ‘reset’! It means that my immunity is still on the low side. Over the next 18 months, I will be getting all the vaccinations to protect me from the usual childhood diseases. I am still in semi-isolation but have started going out for a few meetings, though I tend to avoid crowds.

I was back at church was over Easter for the first time in four months. I sat in the back away from the crowds and avoided shaking any hands during the ‘kiss of peace’. We have a tradition on Christmas Day and Easter Sunday, when the men are invited to go up to the altar to sing the penultimate hymn. When my friend, Ray, started this tradition, about 15 years ago, we used to have about 10/15 men go up, but now well over 60 men go up to sing the penultimate song. Follow this link to get a feel for what it is like, this was Christmas 2011 while I was in hospital; http://www.youtube.com/watch?v=QPcZmTVvAak. I did not go up to sing this year. Ray dedicated the song, ‘Amazing Grace’ to welcome me back and telling all that song represented my journey. How true! Even writing about this, makes me emotional! It was a very moving moment to hear the words “Through many dangers, toils and snares, I have already come; Tis Grace that brought me safe thus far
and Grace will lead me home”

It was over a year ago, Monday April 11, 2011 that I was diagnosed with CML (Chronic Myeloid Leukaemia) and then on Tuesday December 13, 2011 I underwent a bone marrow transplant, a ‘reboot’ of the system. The last twelve months were tough, probably harder on Pat than on me. We were very blessed with the help and constant support we got from all our family and friends. Thank you for this ‘Amazing Grace’.

There isn’t much more to write about this particular journey of mine. I found that writing this ‘blog’ helped me a great deal in remaining positive. I have no doubt this positivity helped me in my recovery.

The BCR-ABL count, this is the cancer cell count dropped to a very low level after the bone marrow transplant. It was at 0.02. Then it started to go up again, first to 0.1 and now it is at 0.2. Ideally, it should remain below 0.1. These are still very low levels. One of the reasons they took me off the immune suppressant is to try to get my blood to fight this cancer. The challenge for any cancer patient is the worry that the cancer will return. That is for another day, another blog and if it does, I will have to deal with it. In the mean time, it looks like, I have won this battle!

I recently posted this on my facebook page.  My son Amal is running for his father!  There were many ‘silver linings’ in the my cloud and this is one of them. I am a proud father! Thank you Amal. Please do support this cause!

http://www.mycharity.ie/event/amal_perera_leukaemia_run/

Please feel free to suggest a new topic for my next series of blog posts!

That’s all for now Folks! Till we meet again …….

3 replies on “Amazing Grace”

We would really miss the blog. We thank god everyday for the way he has led you through this difficult time. I am fortunate to have you as a brother & we are all fortunate to have the four of us. God bless & take care Mahesh, Rosanne, Aimée & Michael

Thank you so much Raomal for your
inspirational blog. It made me think about what is really important in life. So many times we ‘sweat the small stuff’ leaving us little or no energy for the big challenges. Your blog made me reassess the important things. Thanks for that. I wish you all of God’s blessings in your continued recovery.
Kathy.

Raomal – Congratulations on making this journey and finishing in such a happy, healthy place. Having walked the same path, I know this was not easy for yourself or all those who love you. You have much to be proud of and thankful for. Life is a gift.

– Bill Deane (Kathy’s nephew)

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